Comment by Rita on April 28, 2013 at 7:55am

We're sort of on the same path, minus the fact that I've already gotten through the HS crap. But medical wise, I'm just starting down this path. Within the last 2 years, I had my gallbladder removed because it just stopped functioning. After that, it seemed like my digestive system went hay-wire. Went and saw a GI who did a complete work-up. As of now, I don't have Crohn's, but he thinks I'll end up getting it down the road, whatever that means. But my liver is starting to scar up out of nowhere, he thinks it could be primary sclerosing cholangitis (autoimmune) or maybe just a hepatic artery injury from the GB surgery. Anyways. I also got diagnosed with interstitial cystitis, which is inflammation and ulcers of the bladder, I was told that this is probably autoimmune in my case because of me being only 19. I haven't seen a dermatologist in years because I'm sick of being a 'lab rat' and trying all of these new treatments that are killing our pocket and they make me incredibly sick. I started out with alopecia as a young child, it came and went through the years, but when I stopped treatment, it never came back. The weird part is that sometimes I'll get the peach fuzz, but lately as my health is pretty much a disaster it fell out again. Kinda weird how all of this stuff is sorta connected, but at the same time finding that connection isn't easy.

Comment by Michjo57 on April 28, 2013 at 3:41pm

I had hair loss, first my eyebrows, then shedding of the sides of my hair then I noticed my arm and leg hair was gone also. This all started after I was given a cream that activates the immune system to treat some precancerous spots on my back. I really feel as though the medication activated my immune system to go into overdrive. The area where the cream was attacking the precancerous skin lesions, that area had a lot of hair, so I think my immune system also thought it was suppose to attack my hair. This is my theory anyway. I was talking to an oncologist the other day and he told me they are seeing more and more autoimmune disorders. I wonder if Remicade works the same way to activate the immune system? I know several people that have taken it for Crohn's and did not have the hair loss (yet). God Bless Adam, stay strong!

Comment by Adam L on April 28, 2013 at 5:32pm

@Rita - Wow, sorry to read about all the stuff you're dealing with. I agree, all this stuff is connected and crops up in different ways, which makes it so hard to figure out the cause. That's what is so frustrating...right when I began to lose my hair, the Remicade levels were very high, which was the only thing different for me and makes the most logical explanation for the hair loss. I know people can have Alopecia where they lose all body hair, but it's more rare compared to just on the scalp, which is why I really think its the Remicade,because its almost like my whole body reacted to the high levels of it and got rid of the hair.


@Michele - So your hair loss developed after you took that medication? Your theory is similar to my mom's. She thinks that it could be that since the Crohn's is under control, my body had to find another area to go after so it turned into Alopecia. Remicade doesn't activate the immune system, it actually deactivates it (to an extent). I've done a lot of research online and found several people saying they had hair loss from Remicade. My levels are back to normal, and it appears as if the hair is starting to grow back, it's just so darn slow, which my derm said is not unusual since it fell out from deep down in the follicle. Anyway, thanks for the kind words and good luck!

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